In re Grady

Lee Ann Grady is an 18-year-old alleged incompetent afflicted with Down's Syndrome. Her parents sought to have her sterilized by tubal ligation but their request was rejected by Morristown Memorial Hospital unless authorized by the court.

Seeking such authority, Lee Ann's parents filed the present complaint. They allege that their daughter has neither knowledge of nor ability to understand sexual relations or reproduction; that she is unable to decide to have and would be unable to care for a child. Supported by affidavits of two physicians, the complaint seeks appointment of a special guardian authorized to consent to the proposed tubal ligation.

On the return date of the original order to show cause this court declined to rule on the basis of the physicians' affidavits alone. Instead, a plenary hearing was ordered at which medical and psychiatric testimony would be presented concerning Lee Ann's competency and her physical and mental capabilities and disabilities, particularly as they relate to her capacity to bear and raise children.

Also on the return date, a guardian ad litem in the person of Richard Kahn, Esquire, was appointed to represent Lee Ann during these proceedings. The parents, however, seek to be appointed as general guardians upon a declaration of incompetency.

The guardian ad litem was directed to give notice of these proceedings to the Public Advocate and the Attorney General, both of whom ultimately intervened.

Upon application by the guardian ad litem an order was entered requiring that all testimony concerning Lee Ann's personal physical and mental characteristics be taken in private and impounded. After in camera testimony by Lee Ann's father and

5. Lee Ann is presently functioning at the upper range of severe mental retardation. Her intelligence quotient is in the upper 20s to upper 30s range. Social maturation and developmental scales are within the same range.

6. Lee Ann has some difficulty in communicating with other people.

7. Lee Ann is functioning educationally as a trainable student.

8. Due to the genetic basis of her disabilities, medical or other treatment will not significantly alleviate her mental developmental or social disabilities. It is unlikely that there will be any significant improvement in her mental, social and developmental capabilities at any time in the future.

9. Lee Ann suffers from no extraordinary medical health problems. In particular, she does not appear to have any of the serious physical illnesses often associated with Down's Syndrome. She is expected to have a life expectancy of normal duration.

10. Lee Ann is incapable now and in all likelihood will remain incapable for her lifetime of caring for herself and her personal needs as an independent adult. Through the remainder of her lifetime Lee Ann will in all likelihood remain dependent upon others for her personal care.

11. Lee Ann is incapable now and in all likelihood will remain incapable for her lifetime of being responsible for the care of any other person, including an offspring.

12. Lee Ann's ability to think, reason, form judgments and make reasoned decisions is very limited.

13. She is incapable now and in all likelihood will continue to be incapable in the future of making reasoned decisions concerning matters of procreation and contraception.

14. Lee Ann is unfit and unable to govern herself and to manage her affairs.

Thereafter, several days of expert testimony was taken in open court.*fn1

Down's Syndrome results from chromosomal error. In the most common form of the disorder the cells of patients with Down's Syndrome contain 47 chromosomes rather than the normal 46, there being three # 21 chromosomes instead of the usual pair. Varying degrees of mental retardation, often serious developmental difficulties, and any of a large number of physical anomalies characterize the disorder. The largest identifiable group of the mentally retarded is composed of Down's Syndrome individuals.

Down's Syndrome bears the name of London physician John Landgon Haydon Down (1826-1896), who was the first to differentiate it from other types of mental retardation. In his classic lecture presented in 1866 he compared the facial and physical features of Down's individuals to those of Mongols. Thus Down's Syndrome came to be known as Mongolism and those afflicted as Mongoloids. Counsel have agreed that the use of such misleading and degrading ethnic labels serves no purpose and should be avoided.

In the last 20 years we have witnessed a revolution in our understanding of Down's Syndrome. While the causes remain unclear, the mystery of the chromosomal aberration has been solved. Our knowledge of the varying effects on afflicted individuals is greatly improved and continues to expand. Medical advances have provided the ability to surgically correct congenital heart defects, cleft palate and intestinal disorders. Antibiotic therapy has controlled respiratory and middle ear infections. Increased understanding of proper nutritional management can prevent obesity. Life expectancy has been increased from an average of 9 years (1929) to 18 years (1948) to a possible 50, 60 or 70 years today.*fn2

Recent years have also brought an awareness that patients with Down's Syndrome are not a homogeneous group. There are wide variations among Down's individuals in physical features, intellectual and developmental capabilities, psychological makeup and personality traits.*fn3

Attitudes toward habilitation are decidedly more humanitarian and the prognosis for the fullest possible development of the Down's Syndrome individual is enormously brighter. Experts counsel parents against attempting to create a virtually risk-free environment. A degree of risk-taking and failure is an undeniable part of the process of gaining the fullest possible independence and maturity. Instead, structured situations in which the adolescent can accept responsibility, make decisions and initiate actions are desirable. Automatic placement in an institution is giving way to home care in a family setting. Home care supplemented by an aggressive early intervention program has made a significant difference in the levels of achievement of Down's children.

The trend away from institutional care has led to creation of public school classes for educable and trainable mentally retarded children. Sheltered workshops and neighborhood board-and-care facilities can provide lifetime care. Community groups have become aware of the need to provide recreational and social opportunities for the mentally handicapped. With these improvements, experiences once thought to be exclusively available to the "normal" population can also be enjoyed by the retarded.

The parents of Lee Ann Grady have given her the advantages of home care and public school classes for trainable children from which Lee Ann has unquestionably benefitted. They propose to afford her the additional advantages that a group-living program with sheltered workshops and recreational and

social activities would offer. They perceive the relief sought here as a desirable step toward more independent living.

That which Justice Pashman said of Sharon Berman applies as well to Lee Ann Grady.

Notwithstanding her affliction with Down's Syndrome Sharon, by virtue of her birth, will be able to love and be loved and to experience happiness and pleasure -- emotions which are truly the essence of life and which are far more valuable than the suffering she may endure. [ Berman v. Allan 80 N.J. 421 at 430 (1979)].

Down's Syndrome and Mental Retardation

Mental retardation is by far the most pervasive and limiting aspect of Down's Syndrome. The American Association on Mental Deficiency definition of mental retardation has the widest acceptance:

Mental retardation is commonly classified from profound to mild, according to IQ scores. The most profoundly retarded attain IQ scores under 20. They require virtually constant care and have major physical and sensory impairment. Those with scores of 20-35 are severely retarded. They manifest retarded speech, language and motor development. Persons in the moderate range (IQ scores 36-51) are usually slow or retarded in general development and require supervision in a sheltered environment. The mildly (IQ scores 52-67) and borderline (IQ scores 68-83) retarded frequently can work at suitable jobs and achieve a considerable degree of independence. Generally, those with IQ scores 50-75 have been classified as educable and those with 30-50 IQ as trainable.

These categories are general; the number levels are arbitrary. It cannot be said too often: an IQ score is merely a guide.

Multiple handicaps such as speech and language deficits and hearing loss make IQ extremely difficult to assess. A phenomenon peculiar to Down's Syndrome is the discrepancy between auditory and visual recognition skills. The ability to learn, discriminate and remember by auditory means is poor, but visual acuity is comparatively good. The disparity exists irrespective of ability. Furthermore, talents, such as artistic and musical abilities, are not reflected in an IQ score.

For many years, it was assumed that the great majority of Down's patients were severely or profoundly retarded. But Siegfried Pueschel in his book Down's Syndrome: Growing and Learning , states:

As in many areas of development, the intellectual abilities of the child with Down's Syndrome have always been underestimated in the past. Recent reports, as well as our own investigations, negate previous impressions that children with Down's Syndrome are usually severely or profoundly retarded * * * the majority of children with Down's Syndrome function in the mild to moderate range of mental retardation.

Lee Ann functions in the upper range of severe retardation. Her IQ is in the upper 20s to upper 30s range. She has been attending classes for the trainable mentally retarded and in the past year has benefitted from sheltered workshop training. She will need lifelong supervision but her parents hope that her future may be planned to offer the maximum opportunity for personal independence and social interaction within the bounds of her natural limitations.

Down's Syndrome and Sexual Development

Parents strive to provide for their children the fullest possible emotional, social and sexual maturity by the end of adolescence. For the normal child this means total independence from home

and family. For the retarded youngster complete independence may not be a realistic aim.

The achievement of sexual maturity by the mentally retarded is a subject capable of evoking strong emotional responses. Society's reaction to the sexual behavior of the retarded traditionally has been shaped by misconceptions and ...

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